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HISTORY OF THE PROSTATE FORUM

History of Prostate Forum - continued from our home page:

The First Presbyterian Church of Fullerton offered a room for the meeting without charge, as part of their commitment to community service. At the first meeting, people sat in a circle describing their experiences, asking questions and getting some answers.

We had early recognized that, in addition to the usual psycho-social support, newly diagnosed men needed detailed medical information to partner with their doctor in choosing an appropriate treatment. , Our name became the "Prostate Forum" as a model for open dialogue. We are an all volunteer organization with all informational materials, print and video, free to everyone. When we outgrew the "50 person max" Board room, the church provided the Fellowship Hall which can hold 150 persons, and has sufficed for most meetings. In special cases, for nationally renowned speakers, the church permits the use of the sanctuary which can hold 400. We have had more than 275 attendees when physicians such as Snuffy Myers, Stephen Strum or Bob Leibowitz are presenting.

In 1996, a Board of Directors was established with men who are motivated,involved, analytical, have broad experience in different professional careers and are practical. They are business people, an attorney, engineers, an accountant, a mathematician, a geologist, etc. The current 12 directors plus 4 significant advisors, bring broad vision to develop, and achieve the group’s objectives and provide different perspectives for guidance and oversight to reach our goals. They have become essential, providing leadership, review and direction. It is their active involvement, volunteering many hours in significant activity which permits the Forum to continue our valuable community contribution, and grow

In 1998 a format of two meetings per month was established. Our main meeting is in the evening. The second meeting is in the afternoon, accommodating our older members, and those unable to drive at night. We also offer regular pre-meetings, often called "Prostate 101". These sessions are specifically designed to bring the newly diagnosed up to speed faster so they may better understand the level of information and sophistication which is usually presented by the many expert and famous speakers to our very knowledgeable audience. New members show up in numbers from 5-15 per month, so that in February 2010, the postal mail list contain 365 members from 100 cities and towns plus plus 745 email members with growth expected as before.

A serious need continues for volunteers to share the many tasks necessary to produce an interesting and valuable experience but it is the Board members who end up taking care of continuing jobs. Volunteers are solicited; they could even serve for a short term on temporary assignments, if that were all the time they could spare. Anyone wishing to help is welcome. Please contact us to volunteer your expertise, special talents, energy or time.

CO-FOUNDERS BACKGROUND:

Murray was diagnosed in 1991 with very early stage PCa and had several differing pathology opinions, leading him to research, as much as an informed medical lay-person can, at the medical libraries. Armed with some knowledge, he also participated in a local hospitals support group and quickly realized that most men diagnosed with Prostate Cancer had very little knowledge of their illness or their options. He exercised very careful, active "observation", now termed "active surveillance" until in 1993 with a sudden rise in PSA velocity, Murray chose a treatment of: 4 months Complete Hormonal Blockade, then a 40% dose by Proton beam radiation at Loma Linda, followed by 60% pelvic radiation dose by Linear Accelerator at a local hospital. Results were excellent and no further treatment has been needed. Murray is retired from Aerospace, as an Electronic Engineer, Project Manager and finally in Human Resources as Manager of "Employee Development" and training. He was also Director of Ethics for the corporation. Murray is a founding member of the National Prostate Cancer Coalition (NPCC) as well as of the California Prostate Cancer Coalition (CPCC) continuing as a Director on their Board. Collecting and sharing current prostate information occupies most of his time currently.

Bill was diagnosed at an early stage and was treated in 1985. His first urologist’s recommendation for a radical prostatectomy at age 62 was unacceptable. A third opinion resulted in the unforgettable words: "You don’t have to pay the price of a radical - you are a candidate for radioactive seed implantation". After a week of researching medical journals at UCI Medical Library, Bill decided to go to Sloan-Kettering Memorial Hospital in New York, where they had pioneered this technique. A successful implanting of Iodine-125 by the old fashioned open body method kept his cancer under control. Bill was one of the most respected activists on the prostate cancer scenewith national recognition of his many extraordinary accomplishments Unfortunately, in 2001, Bill passed away, not from PCa, but from Lou Gehrig’s disease (ALS). Bill was a founding member of the National Prostate Cancer Coalition (NPCC) as well as of the California Prostate Cancer Coalition (CPCC) and was a Director on their Board until his passing.

SPECIAL ACCOMPLISHMENTS:

· We have become one of the largest, independent, and growing Prostate Cancer support groups. Our established credibility is such that distinguished urologists and oncologists now request an opportunity to make presentations to our group. Numerous physicians now refer patients to us and many post our flyers in their offices to alert their patients to the existence of a credible information source. They recognize that our attendees are truly informed, very knowledgeable and sensitive to the needs of the patient. We have very positive feedback from many hundreds, if not thousands, of PCa survivors who have been helped.

· We have available dozens of the most current, printed educational materials, always free.

· We offer a complete video lending library which numbers more than 200 DVDs. These include copies of many of our guest speaker presentations, national symposium speakers as well as commercially produced materials.

· We designed, produced and found funding for the first national Prostate Cancer Public Forums in 1995 and 1996. These conferences had programs with nationally renowned physicians speaking to lay audiences on the latest medical information on prostate cancer, this was a first. Those Public Forums became a successful model for over a dozen similar symposia in the major cities of the country. By using lectures and self-selected workshops, we presented an opportunity for learning in depth as well as dialoging with the experts. The 1995 Forum attracted 850 attendees from 28 states; the 1996 attracted more than 1200 attendees.

· We have had a Hotline since 1992 for persons to telephone for credible, authoritative information (NOT advice) delivered with sensitivity and counseling. We help allay the fears and terror associated with the Cancer diagnosis. In this function we have helped more than 2000 persons, primarily in Southern California, but also from all over the U.S.

· We have become a credible, valuable and worthwhile source of information and respected by many members of the medical community.

· We have assisted the initiation of 4 other prostate cancer support groups in the Southern Californiaarea.

· We became, in 1999, the largest chapter of Us-TOO International, providing us with a non-profit 501[c](3) status and offering donors tax deductibility for contributions. In 2009, we became a non-profit, volunteer, charitable corporation with our own 501[c](3) status.

· We are one of the founding members of the National Prostate Cancer Coalition (NPPC) and of the California Prostate Cancer Coalition (CPCC).

· We are affiliated with PAACT (Patient Advocates for Advanced Cancer Treatment).

· We have several members of the Board who are part of a "speakers bureau" to present information about prostate cancer at businesses, government offices and service organizations. Requests often come through the American Cancer Society.

· We have provided 25 sets of 5 prostate cancer books to Orange County libraries.

Note: In conjunction with filing for a 501 [c](3) status in November 2008, the name "Prostate Forum of Fullerton" was officially changed to "Prostate Forum of Orange County, California".